Wednesday, February 18, 2009

Moving On

The past two days I've been busy visiting a potential preschool for Brian. Josh, Corbin, & I checked it out yesterday and spent almost an hour and a half there. Then today I took Brian and we spent another hour exploring. I'm very excited about this school, Woodfords! They've recently located to a new location and have all kinds of room. The program is inclusive though there aren't a whole lot of "typicals" but there is hope there will be more soon. There are several different classrooms but they all gather together for certain times of the day. There are visual prompts all over the place, a BIG gross motor room for plenty of times for sensory breaks, our speech therapist actually does therapy there, all the children with autism have aides- yet the aides change so they don't depend too much on one person, and the program is still ABA based but in a very natural setting. We're making the transition but I'm not too sure how soon he'll be able to start.

Though I'm super excited about this I'm feeling very sad about leaving Discovering Kids behind. We've been with them since Brian was very first diagnosed, over two years ago. We've learned so much from them and they have helped Brian progress so much! Like everytime I make a choice regarding the children's therapy or school I get nervous, second-guessing myself, hoping I'm making the right decision. I think I'm the best judge of what they need so I just need to stick to my guns and pray for the best!

Tuesday, February 17, 2009

Basketball Superstar

Today was the last session of the six week basketball program that Corbin has been involved in. They played a scrimmage today and his team won 4-0. Corbin is definitely not shy on the court and quite the aggressive player- maybe doesn't have the fundamentals but the drive and the spirit are there! He shot probably about ten times- didn't make any but I was proud of him. Lots of steals as well and almost ZERO dribbling lol. I took this video- sorry about the focus going in and out- I was just using my digital camera. He's little #36 driving to the basket :)

Sunday, February 15, 2009

Valentines Day

Brian and I had the chance to be guests at Corbin's Valentines Day party at school. We had fun and Brian did really well. I can not say enough how much I love Corbin's teacher. Every idea I have to tweak C's IEP just a little bit she is right there to do it- she is even working with him after school a couple days a week. On top of that Corbin loves her. AND she goes out of her way to say "hi" to Brian everytime she sees him and very patiently waits for him to reply. AND she made GFCF cupcakes for the party because she knew he was coming :)

Corbin and I made these really cute airplane valentines for all of his classmates- I got the idea from Family Fun. I was really impressed with him writing so small on the sticks of gum. I decided to try to my skills at a flower bouquet made out of fresh fruit- I was happy with the results and Corbin was ecstatic to hand out the "silly flowers" to everyone at the party.

Friday, February 13, 2009

Be Nice

Today at Brian's morning circle at school the subject was manners. He was there without an aide and he was being quite loud and one of the teachers removed him for a minute until he was quiet and then he went back. A minute or so later the head teacher asked the class, "Okay, so what did we learn today?" Brian was sitting all by himself (well with no teachers near him to prompt him) and he raised his hand, waited for the teacher to call on him, and then said, "Be nice." As clear as day.

I wasn't there to witness this unfortunately but was told by his teachers at the end of the day. My jaw hit the floor!

Sunday, February 8, 2009

This is My Son...

He is the one you see at the playground, not playing with the other kids. He is content to sit alone, and let sand fall through his fingers and onto his leg. He is the one running in circles, running under the occupied swings, and happily screaming really loud.

He is the child in the store, having a meltdown, and I can't always figure out why. His senses are stronger than my own. Everything is brighter and louder to him. The crowds of people are uncomfortable to him.

My child is the one who would rather switch the light on and off than sit down and play a game with me at the table. He would rather eat the crayons than color. He would rather walk around aimlessly with a train in his hand than to play with his brother.

He is the one that sometimes wears the special flimsy shoes and clothes with no labels because he is oversensitive to texture. He's also the one that walks around with that funny-looking vest on over his clothes. It's called a deep-pressure vest and it gives him the input he is always looking for.

He is the one who insists on sameness. He would watch the same movie over and over all day if he could. It wrecks his day when the rice pasta is penne, not spirals. He thrives on things being the same,and doesnt understand it when things change, or when mom can't find his favorite things.

My son is the one who can't express himself with words, so he uses crying, he hits himself, pulls his own hair, he shakes from being so frustrated, to express his anxiety. He jumps up and down, while flapping his arms, and releasing a really high-pitched squeal when he is happy.

but most important, my son is my son, and he is the boy who can brighten my day when i get that smile from him.

He is the boy I love to cuddle with on the couch when he's ready to do that.

He is the one that makes me see the world a little different, and makes me and everyone he knows realize that it's okay to be different,and march to the beat of your own drum.....

I am the mom who looks frazzled when i'm shopping.

I am the mom who walks away in a sweat after washing his hair, cutting his fingernails, or trying to, god forbid, give him a haircut.

I am the mom who will search the whole darn house for that one special train to make the crying stop.

I will watch that kid movie 5 times in a row, because it makes my son happy.

I am the mom whose entire planner revolves around therapies, doctor appointments, and IEP meetings.

I am the mom who sleeps, eats, and breathes autism. Who researches every aspect as thoroughly as possible to try to help my son reach his potential.

I am the mom who cried and cried when she first heard her three-year-old son say "Mama!"

I am the mom who can't go out of the house without checking our checklist- deep pressure vest, PECS, dynavox, GF snacks, change of clothes, trains, and his massager.

I am the mom who lives for those smiles and butterfly kisses!

Thank you, Brian.

Friday, February 6, 2009

Transient (or toxic) Synovitis

I awoke Brian yesterday afternoon after a long nap with hopes to go to the grocery store. He was so cranky and clingy I didn't dare make that trip and the rest of the evening he just kind of hung out on my lap or laid down watching a movie. I was not impressed with the thought that he was getting sick once again. When I put him to bed and was putting his pajamas on him he said "Ow" and and I asked him if he had a boo-boo and he said "Boo-boo, yes" and tapped his leg. I looked all over his leg and I didn't see anything and he was back to laughing at that point so I thought maybe he was just using his language inappropriately (wouldn't be the first time).

This morning I went into his bedroom to wake him up. He wouldn't get up so I was teasing him about his lazy bones and started to just dress him as he laid there. Once I got his underwear past his knees he let out a blood-curdling cry. I knew instantly that something was wrong. Brian has a very high pain threshold, so you know when you hear that kind of cry that he is hurting big time. I carried him downstairs and tried to examine him- he wouldn't stand up and he wouldn't straighten out his left leg.

I called his doctor and asked if I should just go to the ER but they said they wanted to see him first but they couldn't see him until 10:50- don't you love it? So our morning DRAGGED as he watched cartoons but he kept trying to sit up because he just can't sit still and that would cause him to scream in pain even more. Finally, after his examination at the doctors they sent us to the hospital to get X-Rays.

I was very concerned on how they would ever do x-rays on him. As usual, when I have concerns about something, he just amazes me and breezes through it. The technician told me he was one of the best four-year-olds she had ever had in there :).

We came home to wait and wait for the results- I'm a huge worrier so of course it seemed like forever. It turns out he has transient synovitis (also known as toxic synovitis). It's a swelling of the hip that tends to follow viral infections- Brian had that really high fever he couldn't kick just a couple weeks ago. It is actually fairly common in young children and especially among boys. It is going to last 7-10 days unfortunately and there isn't much we can do about it but give ibuprofen and try to keep him off of it as much as possible. Also need to watch for a fever as that could mean it's actually something bacterial.

He's a trooper and is actually quite happy as long as you don't bend his leg past a certain angle. He's trying to walk now- very slowly and with a very pronounced limp. It's going to be hard work to convince him to take it easy.

Thursday, February 5, 2009

Another Bump In This Long Winding Autistic Road

We've been struggling for a month now since Brian's one-on-one left us. Applicants after applicants were turned away and about two weeks ago we were given *A*, kind of the "VP" of the company we go through, just as a stand-in until we find someone permanent. I was very excited about this- someone to help everyday and to help us just get back into some kind of schedule- I knew the routine would help Brian so much as he has been having such a hard time.

When I told a few other colleagues of mine that *A* would be working with Brian they all grimaced a little and said, "She's really controlling". I watched her the first day at Brian's preschool and I, honestly, felt she was not controlling enough- she was letting Brian wander at the end of lunch instead of telling him he needed to sit or clean up. Over the next few days I watched them at home in the afternoons and she seemed fine. I was happy that Brian was happier about going to school, now that I wasn't driving him there- the transition was so much harder for him when it was me dropping him off. I was feeling good about the situation despite other people's impressions of *A*.

Today, as I was deeply engrossed in Breaking Dawn while Corbin was having a speech session, Brian's OT popped out and asked me if I had a minute to talk to her. I knew something was up right away as we are totally informal with eachother and her demeanor was off- her and Corbin's ST are like family to us. I went into her office with her and she actually had tears in her eyes as she told me that she visited Brian's preschool room today and she was not happy with what she saw. She said that she watched *A* manhandle him all day, holding his head forcing him to look this way and that way, she was giving him absolutely NO physical space, she was being way too strict with him and just on him all the time. She watched them at the writing center where *A* had him actually write the number "3" fifteen times while his friend, Emma, was right there trying to communicate with him but instead *A* just kept moving his head back to the work and always stepping in fixing his grasp. She watched her over and over just ignore social opportunities to instead "fix" whatever he was doing wrong. And of course because he's being rode so hard she witnessed him tantrum after tantrum while there. Of course by the end of this talk, I was in tears too. *A* has had me believing that preschool has being going GREAT and that he is just having a grand time there. Our OT is writing a formal complaint and said she was having a hard time staying on Brian's team when such things are happening as she feels all of her hard work with him is completely destroyed as they are only giving him more and more anxiety. Of course, she won't leave us, but she isn't going to stand it without a fight.

Brian's OT and I have always been on the same level. She is on the GF/CF diet herself. We both believe that Brian is smart beyond what anyone thinks. We both believe in whole body wellness. We both believe that preschool needs to be a time to be pushing his SOCIAL/EMOTIONAL skills- he has another 18 hours a week just at home that can be used for his cognitive skills which really, I know are important, but if he's under stress and checking out he isn't going to learn those skills. Brian knows his letters, shapes, colors, numbers all receptively and some expressively- he can put numbers in order, he can make patterns, he can write his name, he can color inside the lines, he can cut across a full sheet of paper in a straight line, he can follow complex directions, he is learning prepositions but he can't interact with his peers, he can't figure out how to include them in his play, he can't regulate how excited he gets when a friend comes over to play, he can't talk to his peers. Then I think of this woman constantly "fixing" him, constantly nitpicking, physically moving his head around, in front of his peers and wonder how much harder that makes it for him to connect with them.

I am so over with all of this- options are so limited around here for programs for him- the best program for him, and I know it from the depths of my heart, is MY school but he can't go there because our connection is so strong that he can not fully interact with others when I'm near- he's my "velcro baby", as I call him, constantly needing to be in close proximity to me (he's sitting on my lap as I'm typing this). I'm sooooo close to leaving my job, looking for another, so he can have this chance to go to a program that is based around the Floortime model. I don't dare do so, without something else lined up of course, because then where would we be without my income? I've said this again and again- but I just want a manual that tells me exactly the right choices to make for Brian to make him reach his full potential, to do what is best for him.